What do you do when your child is diagnosed with diabetes? Mary Kate Cary shares her insight in to being the parent of a child with type 1 diabetes.
Finding out your child has type 1 diabetes can be terrifying, and figuring out how to work diabetes care management into your life can be downright overwhelming. If you are a two-parent family, sit down, cry a little, and then read this list together and divide up the tasks. Communication between parents as you approach the steep diabetes learning curve will be essential. Below you'll find a checklist for parents of newly diagnosed children with diabetes.
If you are a single parent, don't be overwhelmed! The tasks may seem a lot to handle, but as you build a routine it will become much easier.
1. First of all, don't panic. Right now you probably feel overwhelmed, confused and scared for your child. That's normal. But keep in mind that type 1 diabetes is not what it used to be. There are still many myths about diabetes because until insulin was discovered in the 1920s, it was a fatal disease. Now, it is a very manageable chronic disease. The medical establishment has been hard at work, both in terms of treatment and a cure, at making diabetes less of a threat than it ever was before. These days, kids with diabetes can do everything other kids can do--sports teams, vacations, pizza parties--you name it. It's hard to believe, but eventually diabetes will just become one more part of your child's life that you'll teach them to manage. And there are plenty of families who are willing to help you.
2. Educate yourself. Diabetes is a very complicated disease with a pretty steep learning curve, and the doctors may be using terms you've never heard before. Take a few minutes to learn the basics first, and read through our list of terms so you're up to speed. Then, set aside some time to delve into more details about diabetes. In addition to the materials your doctor may have given you, you may want to check out some Web sites. It's easy to become obsessed with the details of diabetes and its treatment, especially at the beginning. Keep in mind that your child needs you right now, and you need to be as supportive and attentive as possible--rather than distracted and reading endlessly. You have the rest of your life to learn about this disease. You only have a few days to set the tone for how your family is going to handle it.
3. Talk to your child. Try to explain the basics of the disease to them in an age-appropriate way. When they ask if they'll have diabetes the rest of their life, tell them they'll have it until there's a cure and the scientists are working on it right now. When they say having so many shots sounds awful, don't say, "Oh, come on, it won't be so bad." Instead, say, "Yeah, it does sound awful, but we're a team and we're all in it together, and we're going to get you through this as a family." If they ask you questions you don't know the answers to, say so, and add that the family's going to learn about diabetes together. Emphasize they can still be whatever they'd like to be when they grow up, with the possible exception of an F-14 fighter pilot. (That could change by the time they're old enough to enlist!) You may want to take a look at our list of famous people with diabetes, in case there are a few your child could identify with. It's your decision as to how far to go with it, but my advice is to steer away from questions about possible long-term complications (heart, eye, kidney problems, for example) for two reasons: First, they may never get any complications; and second, hopefully, there will be a cure by the time the "long-term" comes into play. Kids need a childhood. It's your job to worry, not theirs--in fact, when my daughter starts to worry, I cut her off and say, "Oh no! You're doing my job. I'm the one who's supposed to worry, not you. Please don't take my job." Don't talk about them being sick; talk about keeping them healthy. One thing hasn't changed with this diagnosis: Your job is still to do everything you can to keep your child healthy.
4. Don't forget siblings. They deserve an explanation of what's going on, also in an age-appropriate manner. They may ask you if they will get it, too. (Genetic testing is available which can tell you what the chances are.) It will be a hard discussion but they probably have unanswered questions. You want to give older children ways they can help their sibling. Explain highs and lows and what they might expect.
5. If you have health insurance, call your health insurance company and ask for a supervisor; then ask them to assign a dedicated case manager to your case. This way, every time you have a problem with the insurance company, you will have the same person to ask for help each time. Of course this is NOT something I did, but I wish I had. I found out that you can do this about a year after my child was diagnosed. If you do not have health insurance, call your state's insurance commissioner's office to find out about special programs for the uninsured. The social services department should be helpful as well.
6. Keep track of your child's prescriptions. Look into using a prescription mail order service and obtain two copies of prescriptions from your doctor--one to fill immediately at the local pharmacy and one to mail out, to receive three-month's worth of supplies from the mail oder if they'll give it to you. (We occasionally have problems with the mail order so it's great to have a prescription on file at a local pharmacy if we need something ASAP.) You can save money by ordering diabetes supplies by mail order, and you can save time if the service has online access. If so, stock up on extra supplies for the school, grandma's house, etc. My mail order service charges extra for expedited shipping, but if you order insulin with the other prescription, it is expedited for free.
7. Make a trip to the grocery store. Here's a list of snacks: sugar-free Jell-O and popsicles, hard-boiled eggs, low-fat cheese sticks, nuts. These are foods that your child won't need a shot for if they're hungry for a snack, and the fewer shots in the beginning the better. Things to get for treating low blood sugars: flavored glucose tabs, small Cakemate tubes of icing, rolls of Sweet Tarts or Smartees and juice boxes. For general care: alcohol wipes for injections and spot band-aids, because until their fingertips get calluses, they tend to bleed a bit. (Both the wipes and the band-aids are non-prescription so they won't come with the mail order stuff.) You'll also want to put a stash of snacks in the car, so you don't have to hit convenience stores quite so often. Load up on snacks that won't melt in the sun or freeze in the winter: peanut butter crackers, trail mix, Combos and Ritz Bits for a good protein/carb mix, and rolls of Sweet Tarts and Smartees for treating lows in a traffic jam. Don't keep juice boxes in the car. Even though they don't have to be refrigerated, they expire, go bad in the heat, and can explode when stepped on by siblings. And you can't see that there's a problem with the juicebox until the kid has a mouthful of moldy juice.
8. Use the JDRF Web site. Go on the JDRF Web site and ask for a Bag of Hope, which will come to you by Fedex. It contains a variety of books for kids to use when they talk to their class, books and videos for the parents, and "Rufus," the stuffed animal who has diabetes and can get shots, too. You'll also get a copy of Countdown to a Cure, the research update magazine, which hopefully will cheer you up with its content and tone. The JDRF chapter that is closest to your home will send the Bag of Hope; they may contact you and ask if you'd like to be contacted by a mentor family who also has a child with diabetes. You can also go on the American Diabetes Association Web site and order a Wizdom Kit, which contains other good stuff as well.
9. Make a cheat sheet. Give the sheet to the school nurse, teacher and the babysitter (once you feel comfortable having a sitter). My family's cheat sheet has contact and cell phone numbers for both parents, as well as grandparents and the endocrinologist. We also have our daughter's target numbers listed, and what to do if she is either low or high. Since we are on Novolog, the carb/insulin ratio and the correction ratio are on there, with examples of the math. Obviously, you'd have the pertinent info for the type of insulin you're using or for a pump. The teacher's copy has the steps for how to give a shot of insulin in case the nurse is not available in an emergency. My husband laminated the copies we gave them, but it's certainly not necessary.
10. Stay in communication with school faculty. Set up a meeting with the teacher and the nurse. It is important that you get your child back to their regular schedule as soon as possible. Realize that the school will see you as the expert on this disease and be ready to assume that role (after all, you will be an expert soon!). At this meeting, the three of you should set up a system for regular blood checks, who will give shots and oversee doses, how you would like lows and highs treated, and when you should be called or asked to come in. Mention to both of them--and amend any forms you turned in at the beginning of the school year--that if your child needs to be sent to the hospital by ambulance, you'd like them taken to the hospital where your endocrinologist practices unless the injury is life-threatening. Most schools will take a child to the hospital nearest to the school, which may or may not be the best for your child. One time, I took Annie to the nearest hospital to our house when she had ketones; the emergency room residents were asking US what to do. We had to call our endocrinologist and hand the phone to them. It was awful.
11. Give both the teacher and the nurse extra diabetes supplies. Clearly the nurse will need more, since he or she will most likely be giving most of the shots, etc., during school hours. I gave a smaller set of supplies to the teacher in case they are unable to get to the nurse. In our case, the nurse gets a back-up glucometer set and Novopen, lantus and syringes, alcohol pads, disposable needles, test strips, and lancets. I didn't give her the ketone testing stuff because I decided if Annie's sick enough to have ketones, she's not in school. The teacher got the same list of things as the nurse, only in much smaller quantities.
12. Talk to your child's classmates. As parents, you'll want to decide what to say to your child's class and whether your child wants to be there with you. They may be uncomfortable with "everyone talking about me" and want to take a walk to the library, depending on how old they are.) One book that seems pretty good for younger kids is Taking Diabetes to School by Kim Gosselin, which I believe is in the Bag of Hope and is available on Amazon.com. Read it to your child beforehand so they are not surprised by any of the information in it. It may be hard emotionally for you to talk to the other kids; if so, you can always just read Gosselin's book out loud.
13. Must-Have Books. You should order three copies of The Doctor's Pocket Calorie, Fat and Carb Counter by Allan Borushek. It's only $6.99 and you'll use it a lot. One copy is for the nurse to compute school lunches, one copy is for your house to help with the rest of the meals, and one is for the glove compartment of the car for when you're out at restaurants. This book has a section for national restaurant chains, which is helpful even if you're not at a national chain because you can approximate. Be sure to familiarize yourself with the book, so that you don't confuse the "Calorie" and "Carb" columns and mistakenly give your child insulin based on the calorie count.
14. Order a Medic Alert bracelet for your child. You can find one at medicalert.org. They have kids sizes and they're almost impossible to take off. Medical personnel worldwide are trained to look for the bracelets before beginning any treatment, so your child will immediately be recognized as a diabetic in an emergency. They call an 800 number and have immediate access to the child's medical info (exactly what insulin they're on, the endocrinologist's name, parent contact info, etc.) Medic Alert also ensures that anytime a lost child wearing the bracelet has been located or rescued, they will contact the parents immediately. We've found other "fun" versions of Medic Alert bracelets--leopard print or beaded ones--but they're not so great. They either fall off easily or have to be taken off for showers and baths. The plain old stainless steel chain is the best.
15. Let your family know what's going on. Think about sending an e-mail to your friends and extended family about what's happened, so you don't have to keep telling people in person when you see them. It gets awkward, because people don't know what to say and may say something inappropriate in front of your child. It's nicer to give them warning, and who knows, maybe they'll even say a few prayers for you.
16. Think about getting a baby monitor. For younger kids and for those who have to go up or down stairs to get to you in the middle of the night, you might want to buy a set of baby monitors for their bedroom. That way, if their blood sugar goes low in the middle of the night, they can just call for you to come to them--instead of them wandering around in the dark trying to find you. Plus, it will give you some peace of mind, just as it did when they were babies. Make a clear path to the bathroom and put a nightlight in the bathroom. We found that our child often had high blood sugar in the middle of the night, she would be dazed looking for the bathroom.
17. Keep yourself informed. After things settle down, set aside some time to learn about diabetes. In addition to the books in the Bag of Hope and from your doctor, you might want to check other Web sites that may be helpful. Also, consider participating in some of the research studies involving diabetes--specifically check the NIH Web site for information. It may be too much for you to take on at this time, but there are some studies that only accept people within the first six weeks of diagnosis. Be empowered to make your own decisions about being involved - don't let missed deadlines take away options. Understand that the research may not directly benefit your child. There is no cure at this time, but you could help science move toward a cure in the near future.
18. Most of all, take some time for your own mental health. Having a child diagnosed with diabetes is a life-changing event. Perhaps you think you'll never be able to leave the child alone again, no more vacations, no more nights out, no more sleeping through the night. But things will get better, and eventually you'll be able to make diabetes just another part of your lives. In these first few days, try and take a few minutes for your own sanity--even if it's just a walk around the block, a hot shower or a few pages of reading from your favorite novel. It's natural to be upset about this diagnosis. But try not to get too stressed or sad, especially in front of your child. They are basing their attitude to this disease on everything you say and do. So try to take one thing at a time and believe that things will get better soon.
Please don't hesitate to ask me a question or leave a message about how you are doing. And let me know if you have any more tips for people just starting out with this condition.